Friday, August 29, 2008

One Mother's Story

Hello everyone! I am "Happy in Holland", and I am the first to join in the fun here at "Thru the Tulips". I'm excited to help Tiptoe Mama get the ball rolling on this site and hopefully connect with many other parents of special needs children.

I guess I should tell you a little bit about myself and the story of why I am here. Get a drink and take a bathroom break, cuz it's a long one. JK. Here it goes:

My hubby and I have been married for 8 years now, and we are the proud parents of two beautiful children, Mason (4 1/2) and Mialee (1 1/2). Mason is our little warrior. No matter what cards he is dealt, he just keeps fighting and conquering. When I was pregnant with Mason my placenta abrupted at 31 weeks, and he was born 2 months early at 32 weeks. He weighed in at 4 lbs 3 oz and measured 17 3/4 inches long. Apparently he was the "big guy" in the NICU. After a 4 week NICU stay, he joined us at home on Mother's Day (making it a very special first Mother's Day for me).

Like every new parent does (and probably shouldn't do), I found myself comparing Mason to children around us. When I voiced concerns at well-baby check-ups, I was always told "The delays are due to his prematurity. Don't worry." I accepted this as truth for a long time, but there were things about Mason that didn't jive with what I learned about child development in my college courses. Having a degree in Early Childhood Education, I knew a thing or two about what he "should" and "should not" be doing. I had him in an Early Intervention program by the time he was 8 months old. He qualified for physical therapy--which was fabulous. His fantastic therapist helped him learn to crawl and walk. After he began walking he was released, but I had him evaluated for speech services. I was told he tested within a normal range, but call if I have further concerns. As Mason continued to grow, I continued to watch his speech delay. He was a sponge. He had a HUGE vocabulary, but he couldn't use words to express himself. He could only label things.

Just before Mason turned 3 years old I had him evaluated again, and he qualified for speech services. He began attending an Early Intervention Preschool just after his 3rd birthday. When we went in to meet his teacher I casually mentioned something that was looming in the back of my head. I said, "I've wondered a little bit about autism, but what am I thinking? He doesn't have autism." His teacher was quite familiar with autism and said she'd watch him for a while and see what she thought. Boy was my world shattered the day I picked him up from school and she pulled me aside and said, "You know, I think he does have autism." She had already called in some specialists to observe him and gave me their reports along with stacks of books and resources. I went right home and started researching, spending hours and hours reading books and searching the internet, just to learn about autism.

I didn't know what to do or how to cope. WHAT?! MY child can't have autism--but I knew in my heart that his teacher was right. I think I knew it all along. Over the previous year I had been noticing new behaviors that alarmed me. Mason developed echolalia (repeating words and phrases previously heard from tv shows, books, or conversations). He didn't play with any of his toys correctly. He would just line them all up throughout the house. He would do and undo the same puzzle for hours at a time. He had real issues with having dirty hands, etc. He even began flapping his hands when he was excited. These are just a few. Red flags started going up in my head telling me that these behaviors were not normal. But.....I was going to give him the benefit of the doubt and allow him some time to outgrow it. The problem was.......months passed....more months passed....and he never outgrew it. Things became worse. He started having these horrible tantrums, flopping on the floor kicking and screaming, even so tense he was shaking at times, and I had no idea why. There was nothing I could do to calm him or help him. It's actually like I wasn't even there. No acknowledgment whatsoever. The tantrums began getting closer together until one day, mid-tantrum, I called his pediatrician from my cell phone in the car and said, "Something is wrong with my son. This is not normal." This was just days before his teacher talked with me.

I think my world literally stopped for a day or two when I heard the word autism related to my son. I needed time for it to sink in. I went through a bit of a mourning period where I literally mourned the child that I thought I had. (This is where "Welcome to Holland comes in".) I began all the worries about his future. And I cried a lot. Then one day, about a week later, I woke up. I woke up from that funk I was in and I realized that he is the same sweet little boy that he has always been. He has not changed at all, so why should any plans I had for his future change either. I came to peace quickly with Mason having autism, and I began to embrace it. I began working on learning what I could, getting involved where I could, and getting him the best services I could. His autism brought our family closer together. You never think that you can love your child any more than you already do, but having autism add to Mason's uniqueness made us love him even more.

He began a highly intensive school program for autistic children just a couple months later, and he is now beginning his second year in that program. He has made DRAMATIC improvements in the last year. It is amazing. I have every hope that he will be able to function as a normal child/teenager/adult. Due to the vast improvements, the psychologist we have been meeting with recently gave Mason a diagnosis of PDD-NOS or atypical autism instead of classic autism. This is wonderful news to us. He truly is the most amazing child you'll ever meet.

Not that I haven't talked about Mason enough (there really is sooooo much more to tell about his life), but I'm going to move on and tell you about our sweet princess Mialee. She is a year and a half and a girly girl. She loves shoes, purses, necklaces, shoes, Dora, and shoes. Oh yeah.....did I mention that she loves shoes? Thus far, she seems to be developing normally. I don't have many concerns about her right now, though you can bet I'll be watching her very closely over the next couple years. We are at higher risk for having more children with autism, so it is always in the back of my mind. Either way, autism or no autism, one thing or another, they are our children, and we love them dearly. We wouldn't trade them for the world.

And that is my story----or at least the short version (haha--I know this post is anything but short). I have had a lot of moments where I just wished I had someone to talk to who knew what it was like to have a child with special needs. I'm hoping this site will unite some of us together, so we always have a place to go where someone will understand our rants and our raves, the good and the bad, no matter how simple they are. I can't wait to meet you all!

6 comments:

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Wheelchair said...

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Wheelchair said...

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Wheelchair said...

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